What is a perfect baby?

With the recent publication from the NICHD network concerning survival rates of the most immature infants, there has been a lot of discussion. Including a strange article in “the Daily Beast”, by Jeff Perlman. Why he would publish something there I don’t know, but his argument is weird. He basically doesn’t believe babies can be viable before 23 weeks (he says that at his hospital they have decided that viability is at 24 weeks), and notes that there are uncertainties in gestational age assessment. But he is extremely inconsistent and then argues that we should use that same uncertain assessed gestational age to decide whether a baby should be given a chance of survival, using completely arbitrary cutoffs that reflect the traditional gestational age mantra. If gestational age assessment is so problematic (which I agree with entirely) how can we use that as the over-riding consideration in whether an extremely immature baby is offered intensive care or not?

He goes on to suggest that the data are biased because they are observational; which is also a strange argument. They are supposed to be observational. The data show that, among babies who are born in centers where almost all “22 weekers” are resuscitated, 23% survive, in centers where they are more selective the average survival among infants getting intensive care is 28% but the overall survival is much less, depending on the proportion getting intensive care. In centers where 0% are resuscitated, then 0% survive. I don’t understand where the bias is there. The data are clear and irrefutable, there is huge variation in the approach between centers, and huge variation in survival as a result. Sure, some of the babies who survived who were called 22 weekers might have been 23 weekers, but some of the 22 week babies who were not offered intensive care, and therefore died, might also have been 23 weekers (or even 24 weekers).

Dr Perlman’s article ends by saying that, based on his decision that viability starts at 24 weeks, they will not offer intervention before 23 weeks at his hospital, nowhere does he suggest that parents have been involved in making that decision; I guess the doctors know best.

There have been a lot of comments on parent blogs, including for example “life with Jack” and “they don’t cry“, many of which point out the stupidity of relying on inaccurate information to make life and death decisions, and the fact that survival with impairment is also a success, for many families.

Annie was interviewed about some of this recently on the radio, which reminded me of a recent radio program, in which I made a brief appearance, Radiolab, an NPR radio show that is generally very interesting and well made. When I was on the show, which was triggered by the experiences of a journalist who had an extremely preterm baby, I was asked to be there for my opinions about the story. Towards the end, I was not expecting a certain question, which was how Violette was doing.

I probably should have been ready with a glib answer, but I just stammered a little not knowing how best to answer, then I said simply, that she is ‘perfect’. After the show there were numerous comments, on the website, which implied that the producers of the show had selected families whose infants had unusually good outcomes. I am not going to give a lot of personal details about Violette, and how she is doing, because that is something that is actually irrelevant to this debate. I do want to try and answer the question, also addressed on “Life with Jack

“Does anyone have a ‘perfect’ baby?”

I have several

Or maybe I have none

We are extremely fortunate that Violette does not have a major neurological deficit. But even if she did, can a blind baby not be perfect? Is it impossible that a child with cerebral palsy is perfect?

My daughter will, in all likelihood, struggle more in school than if she had exactly the same genome, but been born at term. Does that make her less perfect as a result?

Not to me.

She is my gorgeous little girl, whom I love without limits, and who has a wonderful life ahead of her. To me she is perfect, despite her imperfections. Just as are my other children.

I am glad that I stammered and said she was “perfect”, I can’t think of a better description of her.

Today is her tenth birthday!

About keithbarrington

I am a neonatologist and clinical researcher at Sainte Justine University Health Center in Montréal
This entry was posted in Neonatal Research and tagged , . Bookmark the permalink.

4 Responses to What is a perfect baby?

  1. bpairtbob says:

    And here we have the perfect answer to the great debate about when do you start resuscitating very premature babies, talk with the parents, see the condition of the baby and start resuscitation and see how the events unfold. You may be successful and give the parents a child they find perfect. You may, at least, give the parents the satisfaction that everything was done for my baby, which will help them with their grief and allow them to move on. Good reply Kieth, I will treasure this post

  2. Wally Carlo, M.D. says:

    Happy Birthday, Violette.

    You are so fortunate to have great parents. Enjoy life.

    Wally Carlo, M.D.
    Edwin M. Dixon Professor of Pediatrics
    University of Alabama at Birmingham
    Director, Division of Neonatology

  3. Wally Carlo, M.D. says:

    Keith and Annie,

    This is an exceptional comment. So clear. You are the voice mind and voice of so many of us. My wife and I have four children; all term, none are “perfect” but they are the most important part of our lives.

    Wally

    Wally Carlo, M.D.
    Edwin M. Dixon Professor of Pediatrics
    University of Alabama at Birmingham

  4. katharinastaub says:

    Hi Keith, Thank you for writing this.
    It is a strange article indeed. “All extremely premature infants will require early intervention, to help with their universal weakness and many other sensory problems. These interventions are essential to the recovery process.” Not sure what the author is talking about here. Recovery to what? “We explain to parents that the outcome is unknown at 23 weeks” Well, the outcome is unknown at 24, 25, 26, 27, 28 etc weeks, we just don’t know what the outcome will be for any individual baby at the exact time of birth based on gestational age only. Do we know the outcomes of full term babies at birth? We do not. Many things will influence that in the course of the child’s life. So the discussion continues. As parents, these decisions change the course of our lives.

    Perfection is in the eye of the beholder. I love what you said Keith.
    I have been asked this question about our twins and my response is that they are perfect the way they are. Perfect for us. We try and support them where we can and I have to remind myself that raising children can be challenging at the best of times. Our children are our own hopes and dreams.
    Joyeux anniversaire Violette! Toute grande. Katharina Staub, Canadian Premature Babies Foundation-Fondation pour Bébés Prématurés

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